Our son was barely four years old when he was officially diagnosed with autism. It was heartbreaking and scary and overwhelming, despite having known for a few months that it was a strong possibility. (I wrote about my story here.) The diagnosis process in many states, particularly California, can be long and convoluted and take far too long, losing valuable treatment time.
During those lost months of waiting for the diagnosis process, we dealt with his head-banging, self-injurious behavior and massive meltdowns caused by anything from a buzzing overhead light in the store to rain on the roof of the house to us bumping his row of cars out of perfect alignment. It was pretty bad, and we spent the next several years with therapists, specialists, doctors and other service providers trying to get through and spark some improvement and clarity.
During those times, you can’t think about years in advance – you think about one day at a time, but you still have to plan long-term. You choose where to live so you have the best schools. You pick your insurance so the best doctors and services are in-network. You craft your job around their needs so you’re available to attend school meetings and get them back and forth to appointments, now and as they get older. You think about what you can teach them, and how to do it, so they are successful in middle school, then high school, and yes, college and jobs. Life can almost revolve around it, which is tough on the family as a whole but you really have no choice.
Then the future you thought about way back then is finally here. You’ve done everything right and your child is still the amazing tiny human, but bigger and better and facing new challenges, many of them the same that everyone else faces. It’s all good, right? Except it’s not. Autism isn’t curable and there are new challenges that they’ll face that are unique to kids and teens with autism. You can’t make it go away. You can modify the diet and engineer the proper atmosphere and minimize problems in a litany of ways, but you know that the best you can hope for is that the therapies have helped him learn to regulate and handle things better, to ignore the humming light, tolerate the rain and not freak when someone bumps into him. With autism, you can heal some of the medical issues that commonly affect those with autism, and you can teach them skills that don’t come as naturally to them as they do other people, but you don’t make autism go away. It’s there – either right under the surface or heavily buried, but it’s there and can show itself depending on things entirely out of your control.
As we go through high school with Little Dude, we know we’re going to hit bumps in the road…but knowing that doesn’t make them any easier. You want your children to be happy and successful, in whatever way that works for them, but getting them there isn’t a static process. A few weeks go by and things look better, but then suddenly he comes home from school miserable and upset. Some days you respond in a way that mitigates the problem; other days, like today, you’re at a loss for words. You have no answers. Worse yet, even the advice that you’ve got isn’t being accepted. You may even hear that you’re doing a poor job of helping him. Ouch. You brush it off knowing that the reaction is a part of autism, but that’s still no excuse. You can’t let them think treating people badly is a proper reaction to a problem, big or small, so you have to address…which just compounds the original problem.
People used to tell me that it gets easier, that being a parent was somehow less stressful or exhausting as they got older. On one hand, totally right. On another, not so much. The problems just get bigger and you can no longer tell them what they should do. They become their own people so quickly, and special needs don’t change that.
As a parent of a special needs teen, I don’t have any real answers, but here are a few things that have helped me and may help others help teens with autism.
- Talk to your spouse or someone close. You have to have someone to converse with that’s not negative and complaining or you’ll go nuts. Trust me on this. Finding people that understand what you’re going through isn’t always easy; too many people want to give you advice and play therapist instead of just listening. If I had a dollar for every time I tried to talk with someone and they tried to compare it to their non-special needs child situation or turn it into a conversation about them, I’d have so much money I could hire a full-time staff.
- Get out of the house and get your mind off the situation, even for small bits of time. A trip to Starbucks is a Godsend.
- Have a glass of wine. It’s okay to do what you can to relax in the absence of being able to take a break.
- Admit that you don’t have the answers and tell your child that you are doing your best but you don’t really know what to do just yet. Ask them for what they think will work, or do what I did tonight: ask him to decide what battles absolutely had to be solved, and what ones didn’t, because those were the ones he’d need to learn to suck up or walk away from, without resolution. We can’t fix everything.
- I repeat: we can’t fix everything. Acknowledge that and stop trying. Sometimes it’s a matter of fixing the worst and hoping the results of that makes the rest more tolerable.
- Find a hobby or outlet that makes you happy. Design a website. Create a blog. Read a book. Binge watch Netflix…all after the kid is in school or in bed at night, of course, but do it. Indulge yourself; at some point, the child really will be more out on his own or at least out of the house more and you’ll need interests to take up all that spare time.
If you’re the friend or family member of a parent of a teen with autism or other special needs, here are a few ways you can help:
- Don’t compare your situation with theirs. Raising your ‘normal’ child isn’t the same. Being a grandparent of a child with special needs isn’t the same. If you don’t have any children at all, your dogs do not compare to their child. (And I’m saying that as a dog lady.)
- Just listen. Try not to come up with your response while they’re still talking. Really hear them. It may be the only time that day someone did, because the kid sure isn’t, and we frequently don’t get out as much as we’d like.
- Keep the “If I were you, I’d…” comments to yourself, especially if they involve spanking, timeouts or taking away something the child really values. If those things worked, our kids wouldn’t be autistic anymore.
- Offer to help. Maybe they need someone to go to an IEP meeting with, or to pick up the kid from school one day so they can vent to someone else before they get home to mom or dad. That doesn’t mean you’re responsible for fixing things, but you can at least nod and listen before you boot them out of the car. Going to the movies? Take the child with you. I’ve had so many offers of that throughout the years and rarely do people follow-through, so don’t just make a false promise or give someone lip service to make them feel better. Truly pick up the kid and take him out. You may find you actually enjoy getting to know him more.
- Don’t let one bad day…or even a few…scare you off. These kids are just as amazing as any other kids, whether they’re boy or girl, and they need friends. Mingle them with your own. It’s not just helping your friend/family member, but you’re teaching your own kids to be kind and include those that are different. We could all use some of that.
Autism isn’t a defect and teens with autism aren’t ‘less,’ they are just different. (Thank Temple Grandin and her mother for pointing that out. Read more about that here.) There are many times I think they are more ‘normal’ than we are, and many of their traits are gifts…but autism can be deadly so it’s still something no one wants for their kid(s). Autism should be covered by insurance and something needs to be done about the skyrocketing numbers that aren’t based on a new diagnostic method. (Don’t get me started on that.) Our kids are so much more than a label, so if you’re the tired, discouraged or scared mom or dad, don’t go it alone. Reach out to a support group, a friend, an online community…or me. Find an ear. There’s help out there for teens with autism, and if you’re not happy with your medical support team, look for a new one. We can only do so much alone.